Pancreatic insufficiency ..No cause?

@sunterrace Welcome to Mayo Clinic Connect! You are increasing your meds on your own which is not really safe but I can understand since your doctor is out of town for a month. Does he have another doctor in his office that you can call and get an appointment? Or have you thought about going to a comprehensive medical center? They are usually located near large cities. Or a university medical center. The doctors are frequently involved in some research so know more about these “new-ish” diseases. Just call one and ask to be connected with the gastroenterology department. Explain your problem and ask if you could get an appointment. Even if it is a drive your health is worth it. My husband did just that. He called the university medical center about 1 hour away and explained that I was in the ER and that no one had a clue. We were able to get an appointment and the university hospital was able to tell the ER docs in the local hospital how to treat me until i could get to the university.

@becsbuddy

Thank you so much for hearing me. I will look into that. I live in Florida, where the healthcare has to be some of the worst in the civilized world (unless you want plastic surgery)! I will give it some thought. It seems I saw Jacksonville mentioned in a post somewhere.

@sunterrace If you think about going to Mayo Clinic (in Jacksonville), the information you need is to the right of this column. It includes the phone numbers, too. It’s a little square that says ‘Request an appointment’. Don’t knock all the doctors in Florida. Try a comprehensive medical center or Mayo Clinic Jacksonville before you give up. I thought I’d never get my life back, but slowly I did. You can, too. Trust yourself.

I’ll try it! I’ll keep you posted.

It seems The most common strength of creon used for adults is the 36000. There is a formula for the maximum dose per meal recommended. It’s on the creon site. The 36000 being a stronger pill will make it easier. Be aware not to allow your pills to get warm. It hurts them. These are live pig enzymes in stasis. Meaning you shouldn’t carry them in your pocket for extended times. Also they say… don’t refrigerate. It’s a “balancing act” all the time. Since you are using so many pills they are likely coming mail order. Do express shipping and order them when weather isn’t at extreme heat. Fedex has AC in their trucks. UPS doesn’t but they can deliver by noon and have someone bring them inside immediately. I was delivered a batch that was almost useless because it came USPS and sat in a closed mail truck for 7 hours. I am the almost last house on the route. Got almost dead pills. Had to take almost double the dosage to be effective. Fyi- Zenpep has a 40,000

How can you tell how effective the pills are when you get them? How do you know how they were shipped prior to your delivery?
I would hope if they needed to be shipped a certain way the company would send them that way. The price difference is shipping methods wouldn’t add a significant amount to the already high cost.

I have had conversations with Creon and they say that I don’t need to worry so much about it. If the pills are keep in heat for 30 days they are useless.